I am gluten...free

Zipp explores getting the gluten monkey off your back

By Ricky Zipp

“I was born a poor black child.” Actually not, but it is a great opener. Plus with a readers comment about the lack of talent amongst the writers, I figured at least one line in the story would be good, even if it were not mine. So…I was not born a poor black child. I was born with celiac disease, but my story of navigating alternate food options, and magnificently-rocked-out-bread, doesn’t really begin until my diagnosis at the age of 18. The overall experiences I have had with this change were defined in hour one of my diagnosis, right before I left the hospital.
I was sitting with my dietician going over my new life of food, and the entire do’s and don’ts of the gluten-free diet. For my first meal down this path she would order my food for me. Rice Krispies. Readers beware: just because it has rice in the name, it doesn’t mean gluten free. Thus, this is the case with Rice Krispies—they are not safe. Freshly diagnosed, and now with, ‘you are going to be taken care of!’ ringing through my head, after years of stomach aches, and a month in the hospital, I am fed the exact thing that I am supposed to be avoiding by the exact people that were supposed to be helping me.
In Corvallis, the level of gluten-free awareness is continuing to grow. We have gluten-free bakeries, gluten-free pizza at various pizza joints, gluten-free beer at Bombs Away Cafe and the First Alternative Co-op, and our very own gluten-free RN downtown. She’s just past the BookBin on Fourth St. Her name is Nadine Grzeskowiak, and she has a little gluten power fighting center dedicated to help educate about, and have others pay more attention to, a usually ignored, medical condition.
Doctors are extremely uneducated about celiac disease. According to Grzeskowiak, textbooks with emphasis on celiac disease do not exist. The textbooks that do exist with information about celiac disease, even our most highly effective and up-to-date medical system, holds information from the 1950s. Mostly all the literature is found in medical journals “which I don’t think the doctors are reading,” Grzeskowiak half laughs before she unloads examples of people being released from the hospital with little help after being diagnosed, or people remaining sick from misdiagnosis, “they just kind of give you literature and boot you out, I have had people discharged from the hospitals still critically ill and given no resources.”
Celiac disease is looked at as an illness that is strictly dietary (meaning there is no pill for the cure). However, there is a push for gluten-free as a product commodity, thus there is now funding for research about celiac disease being a non-dietary illness (meaning they want to develop a pill). According to Grzeskowiak, you do not need any medication to solve your health issues around celiac disease (and actually any pill that has been developed doesn’t work unless you are already on a 100% gluten-free diet).
Being 100% gluten free can be a daunting task and a bit mind-blowing. Wheat is in everything. It is used as a main ingredient, as a filler, as a preservative—it comes in all shapes and sizes—many that you wouldn’t consider. I began to address it as what I couldn’t eat: no bread, no ice cream, no pizza, no cake/brownies/pie, or anything great with sugar, no beer—Mexican food usually works but no tortillas, Thai food is a yes, but only rice noodles. You can have all these things once gluten is removed which sometimes means removing the flavor, texture, sweet smell, and nutritional value as well.
However, it is not just what it is in the food, but also what is around the food. If you are extremely sensitive, gluten-free crust does you no good if it was cooked in a gluten-laced oven. Pristine packages of gluten-free products are void if cooked and manufactured on equipment that also manufactures wheat products.
You can begin to see the gluten-free revolution take over amongst food providers. Give it a little time and there will be the McGlutenless and the new diet idea will hit along the lines of Sir Atkins. Soon commercials will scream, ‘go gluten-free to slip into those summer clothes!!!’
And, this isn’t just amongst the gluten-free. The race to the top spot amongst eating healthy is still up in the air, and a market that has become freshly tapped by pop culture food products. Now, instead of being concreted into the shelves of health food stores the “big boys” have stepped into the game, as have the big boys of pharmaceutical companies.
With no pill that means there is no cure, and no need to buy the cure because gluten-free is able to be solved strictly on diet, and there won’t be any need to return to any type of medical environment for help.
“Doctors were begging the pharmaceuticals for funding for research so that they could come up with this pill, and even if they come up with a pill, you still have to be on the gluten-free diet 100% of the time,” Grzeskowiak says. “Initially I was doing a lot of research and following the groups around and going to the conferences I was really interested in what the doctors had to say, I thought that they were cutting edge and they had the answers, but what I have come to realize is that they are not. I look at everything very critically and all their studies and everything that they come out with because it is all tainted at this point, sorry but that is just the way it is.“
So where do you go from here? This little step towards health throws you into a mess and scramble that begins with even trying to get diagnosed. The box to fit into celiac disease is extremely small, and is currently being redefined, but years can go by without anything getting done. Grzeskowiak failed the test for Celiac Disease, and then self diagnosed, and her massive health problems disappeared in a matter of weeks. The same thing happened with my older sister. Alternate health issues can be stumbled upon by lack of knowledge, or you can fail the test because you don’t have celiac disease, but still may have a high level of gluten intolerance, which there is no test for, but it can still hold the same negative health effects. This can stem back to a misstep in the education. If you aren’t properly diagnosed you can be subject to numerous tests and consequent cures. The extremes that people can go to fix others can be huge when really it is a small shift in lifestyle.
Now the next question, is this the same internationally?
No, while doctors here may not have a handle on how to deal with celiac disease, according to Grzeskowiak, in Finland they have a massive success rate at diagnosis, reaching up to 70% of the people who have it. So, where does this seemingly lack of care and knowledge stem from? We have known about celiac disease since the 1880s, and are just now delving into what this condition really means. In Italy, the land of pastas and bread, you are tested as a child before released from the hospital, and then gluten-free food is sent to you every month—here they push you out with a print out from the Internet.
“In the U.K. you get a prescription for free food and you take it to the pharmacist, and they will help you pick out your food,” Grzeskowiak says. In Italy,”there are so many people with celiac disease that it is breaking the system.”
The power of experience is key, and while this may be sounding bad, the future is becoming a little clearer. Corvallis is moving in a direction that is extremely positive for those with celiac disease, and it starts with those who truly care and wish to give out love to the people. And, this is something that can’t be broken by the system, and something that will not disappear no matter where the dollars of funding are being sent.
A half a block down from Grzeskowiak’s office is the old Living Earth, now Blue Monkey, gluten-free bakery that allows taste to be added to the option of healthy. Eric Miller, creator of Living Earth, along with his wife Jenney, started by baking for friends and family after being diagnosed, and then decided to move forward with the idea of a bakery. “Gluten-free customers really love to tell their stories. I think the biggest thing is how long it takes for people to figure out they are celiac or need to be gluten-free—in some cases years or decades of doctors visits and misdiagnosis,” Miller says. “It’s so great to see people get healthier every time you see them. Both Jenney and I had gone through the same thing, so we really had empathy for everyone.”
And that is where the help will come from, the corner of Jefferson and Fourth St,  at a local upstart bakery, and then a few steps down at the RN. It comes from the streets and the help of the random people that fill them.